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Daily Journal with Mitochondrial Myopathy

Day by Day with a Movement Disorder

My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

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Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

Tag Archives: Babinski

This is a Hard Post to Write

Day by Day with a Movement Disorder Posted on December 20, 2007 by DBDecember 20, 2007 11

I saw my Neurologist yesterday, and it turns out I did have good reason to be apprehensive about the appointment.

First of all, he agreed that I did not have any business having the epidurals on my cervical vertebrae. So, I called my Orthopedist to let them know that they could schedule the Physical Therapy, but not the epidurals. They called back later, and have already faxed the prescription to the PT I used last time, which is close to home. So, hopefully, I will be getting some relief from the neck pain and stiffness soon. Holidays, of course, will be in the way of a regular schedule, so who knows when I will actually start the sessions. It could easily be the beginning of next year.

He also took me off of the Levadopa/Carbidopa plus Lodosyn meds that the ER doc had added to my treatment, since it didn’t seem to be helping much at all. Taking too much of these meds can cause dyskinesia, which is involuntary movements. That may be why I had such an odd tremor develop of late, plus all the facial and tongue tics I have been experiencing.

But the news from the exam that has me so upset right now is that he is no longer sure I have Parkinson’s. He watched me walk, and I was so nervous by then that he got to see me at my worst. Both legs bobbing up and down like I was trying to walk across the floor of one of those carnival blow up bounce machines, and having to hold out my arms to the sides to keep my balance. Turning around and coming back towards him was just as bad. He had me take off my socks and shoes, and he did all the usual hitting with the hammer. He scraped the bottom of each foot, and also suddenly pushed both feet straight up several times, in a slapping kind of motion.

I have had the foot scrape thing done many times before, and I know what that was testing me for – the Babinski effect. That’s a test I failed some years ago when I was seeing a different Neurologist for migraine headaches. As far as I know I have not failed it since then. It has to do with the way your toes curl or straighten out when a hard object is scraped from the heel towards the toes. The normal reflex is to curl the toes inward. If the toes spread out, with the big toe stretching upward, it’s a sign of a lower extremity nerve problem. I don’t know if I passed it this time or not. He didn’t say, and I was too upset to ask. I have tried to look up what the sudden slapping of my feet upward meant, as I have never had that done to me before, but I haven’t been able to come up with the right search terms yet to find out what that was all about. He did move my arms around, while I kept them relaxed, and said he did not feel any cog wheeling. That’s something he would expect to find if I had Parkinson’s, and he has said in the past that he did feel it. It has something to do with the tremors, but that’s about all I know about cog wheeling.

They have made an appointment for me with the Chair of the Neurology Department at the University of Alabama in Birmingham. He is the Movement Disorder Specialist in this area, and is supposed to be my best chance of finding out what is wrong with me. Parkinson’s effects people in so many different ways, it may yet turn out to be the PD that my Neuro had initially diagnosed.

But for now, he has listed my diagnosis as the Peripheral Neuropathy plus Gait Debility. I’m back to that “not knowing” stage, and it is extremely upsetting for me, and for my dear sweet hubby. Of course, as you might expect with the chair of the department, I can’t get an appointment until the end of April. That’s going to be a long, long wait that is not going to be easy.

I felt such relief when my Neuro put a name to what was happening to me – even if it was that I had Parkinson’s. Now I am in limbo again, and I hate it.

Hubby has asked that I stop reading and researching about Parkinson’s for awhile, just to be sure that I have not been subconsciously absorbing the symptoms that I was reading about. That’s a fair request, so I have said a temporary goodbye to my Parkie friends on PatientsLikeMe, and will not be doing any PD research for awhile. I am going to continue to try to find out more about Peripheral Neuropathy, though, because there is no doubt that I have that. Unlike Parkinson’s, there are definitive tests for PN, which I most definitely have.

I don’t know how to adequately explain how I am feeling about all this right now. It’s almost as if I found out I was adopted, or something like that. It’s like my identity has been ripped to shreds, if that makes sense. I have developed some really close friendships with some wonderful PWP over the last year. Now, with one sentence, my Neuro has put the nature of that relationship in limbo.

This NOT KNOWING stage I am in again is very hard to deal with. I am vacillating between being scared of something worse than Parkinson’s, and being relieved that it could be something less progressive in nature than PD.

God is forever trying to teach me patience, and reliance on Him, rather than my own abilities. Looks like He is working on that big time right now. We haven’t actually said anything out loud, but I think hubby and I are going to keep this turn of events to ourselves for now. I can’t see any good reason to add this uncertainty to our children’s lives. They have enough to worry about on their own. So, I will pour out my feelings here on my blog, since no one who knows me personally ever reads it.

Posted in Uncategorized | Tagged appointments, Babinski, balance, diagnosis, difficulty walking, epidurals, exercise, gait, God, Levadopa, Neurologist, Orthopedist, peripheral neuropathy, Physical Therapy, symptoms, tremors | 11 Replies

A Personal Journal

Day by Day with a Movement Disorder Posted on August 21, 2006 by DBAugust 21, 2006  

I’ve been waiting for six weeks to see Dr. S to find out what he thinks is wrong with my legs. I tried to remember everything I could that he might possibly need to know about my past history. I still forgot to tell him about the Bolt Factory and the functional dysphonia diagnosis I had before I quit teaching. I also forgot to tell him that I taught Chemistry for a few years, but I really don’t think that has anything to do with it at all. I did give his nurse my notes about that when we took the old back films to them. But I’m still forgetting to tell them about Uncle Bill!!

He did the kinds of hammering around that I expected and said that I definitely had diminished responses in my legs, but the upper body responses seemed normal. He was sorry that the EMG I had already had did not include any tests of the upper body and wants to repeat that test. He watched me walk, asked DH if I were that slow with everything I did, which I’m not. I did tell him I feel the shakes at times with my hands. I definitely have trouble handling pills and money, and my memory is not as good as it used to be, either, but then I’m not as young as I used to be, either.

I told him about the MRI Dr. Stan had done years ago that showed increased CSF pressure and the negative Babinski test, so he wants a repeat of the brain MRI.

He showed us what a Parkinson’s walk typically looks like, and that’s not what I’m doing. I’m not walking like the typical Peripheral Neuropathy either, so that’s the puzzle of it. I told him about my concerns that it might be psychosomatic from worrying about DD so much and being with her through all her PN hospitalizations. He said that would be the diagnosis of last resort, if I understood him correctly.

Anyway, now I’m trying to be patient while HealthSpring takes their beaurocratic time processing the request for a brain MRI and a repeat of the EMG to include the upper body as well. He wants to do a series of blood tests, too, to check for B12 deficiency and toxic metals I’m guessing.

I liked him and I have confidence in him.

Posted in Uncategorized | Tagged appointments, Babinski, CSF, diagnosis, EMG, MRI, Neurologist, peripheral neuropathy, tests | Leave a reply

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